Parkinson's and New Challenges

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CHAPTER 3

 Grieving in Private 

The hardest part of caregiving was watching her lose herself one ability at a time. From one day to the next, your mother forgets how to eat. Then she forgets how to bathe. Then she can no longer use the bathroom. Eventually, she can no longer speak. I made a conscious decision never to cry in front of her. When I entered her room, I wanted her to see hope, love, reassurance, and a smile. When I felt myself falling apart, I excused myself, went into my bedroom, closed the door, and collapsed. I grieved privately and then returned to her. 

As her condition worsened, she also developed Parkinson's disease. Her body became extremely rigid. For many years, she was essentially paralyzed. Eventually, she stopped speaking altogether. I do not remember the exact day it happened. One day, nothing came out of her anymore. Because I never knew whether she would still be alive the following morning, I developed a nightly ritual. After putting her to bed, I sat beside her and told her everything I needed her to know. "You are safe," I would say. "All the doors are locked. I am right here in the next bedroom." Then I told her how much I loved her. I told her how grateful I was to be her caregiver and how blessed I felt to have the opportunity to care for her. "Mother, you are not alone," I said. "We are a team. We are going through this together. I am going to stay with you through the entire journey. If something isn't working, we will change it. We will find a way to make it better." Then I kissed her, stroked her forehead, and repeated, "I love you. I love you." She had said those words to me every night since I was a child. Now I said them to her. The ritual sometimes lasted twenty or thirty minutes. I never wanted to leave the room. I needed to know that if she died during the night, I had told my mother everything that was in my heart. Those nights still make me smile.  They also make me cry.

 The Night Her Eye Ruptured

One of the most traumatic moments occurred because the Parkinson's disease had left my mother unable to blink normally. I did not understand the danger. I was not a professional caregiver. I was simply a son doing everything he could to care for the mother he loved. One night, I walked into her room and saw blood streaming from her eye. I rushed her to Eisenhower Hospital. The doctors determined that her eye had become so dry that the surface had hardened and ruptured. They warned me that she would probably lose the eye. We traveled to the Loma Linda area, where surgeons attempted a corneal transplant. Because of the Parkinson's, my mother sometimes experienced violent, involuntary jerking movements. The surgeons said she could not move during the operation, so they would have to place her under general anesthesia. They also told me there was a possibility she would not wake up. I went down to the parking lot and completely broke down. I called my therapist and had an emergency therapy session from my car. Before the surgery, I was allowed to be with my mother in the operating area. I held her hand, kissed her, and begged the doctors to take good care of her. She survived the surgery. When I learned she had awakened, I ran upstairs, hugged her, and kissed her. Unfortunately, the transplant eventually failed. The cornea slipped, and the doctors explained that the eye would gradually harden, shrivel, and sink into the socket. That is exactly what happened. Her eye disappeared inward until there was essentially an empty space where it had once been. Then her remaining eye began developing similar problems. From that point forward, I continuously applied prescription drops, gel, and moisture to protect it. I cared for that eye throughout the day and night because I could not allow the same thing to happen again. 

The Decision About the Feeding Tube

 Eventually, my mother also lost the ability to swallow. At first, a swallowing test showed that she could still manage liquids and foods with a yogurt-like consistency. She could no longer eat solid food, but she could swallow some softened substances. Then she lost the ability completely. The doctors said that the only remaining way to provide nutrition was through a feeding tube. Years earlier, my mother had told me she did not want tubes or artificial measures used to prolong her life. But by this time, she could no longer speak, and the decision fell to me. I went down to the hospital parking lot and sobbed. I did not know what to do. While I was there, her neurologist happened to walk past me. "Morgan, how are you?" he asked. "How is your mom? Did she pass away, or is she still here?" His words felt cold and completely lacking in compassion. I told him she was alive and upstairs in the hospital. I explained that I was trying to decide whether to authorize a feeding tube. He responded that more than eighty percent of his patients would not want a tube. His comment only made me feel worse. I returned to my mother's hospital room. In my heart, I felt that she still had more life to live and that I still had more love and care to give her. She did not appear to be suffering. She was not in pain, and I believed I could continue providing her with a meaningful quality of life. I stood beside her bed and placed my finger against the side of her abdomen. "Mom," I said, "they need to make a little opening right here and place a tube in it so that I can feed you. I'm trying to decide what to do. Is it okay if they put a little tube right here?" Suddenly, from a woman who had not spoken in a very long time, one clear word came out: "Yes." That was all I needed. She had given me permission. The surgery went well. When she was wheeled back into the room, she was smiling. Even during the very late stages of her illness, my mother retained the ability to smile. We learned to communicate through our eyes. I could sense her energy, and I believe she could sense mine. She lived with the feeding tube for approximately seven or eight years.

 My Life Became Her Care 

People often say that caregivers must take care of themselves first. I did not do that. I was in the prime of my life, but my life became my mother's care. I loved her so deeply and felt so bonded to her that I could think of little else beyond her comfort, safety, and happiness. Sometimes I was completely exhausted or physically unwell. Yet a sudden burst of energy would come over me, and I would enter what I called autopilot. I completed every task she needed, made sure she was safe and comfortable, and then returned to my bedroom and collapsed. There were many moments when I felt defeated. I was not a professionally trained caregiver. I was a son learning through experience how to handle paralysis, tube feeding, choking, incontinence, blindness, and the gradual loss of every physical function. But there were also moments when I felt triumphant. Years earlier, one neurologist had advised me to give my mother as many as nine Seroquel pills a day, keep her in bed, and "give her her dignity." That was the day I left that doctor. Other doctors and hospital staff also told me she should be placed in a nursing home. When they began speaking that way in front of her, I stopped them.  "Excuse me," I would say. "Can we discuss this in the hallway?" I refused to allow people to talk about giving up on her while she was lying there listening. Even if she could no longer respond, I believed those words could affect her spirit and her emotional well-being. Some people thought I was foolish for giving up so much of my own life. But my mother could still experience happiness.  She could still experience love.  Those things mattered!